Susan's Blog

Sunday, August 6, 2017

But is it okay?

Every time I drop Nat off at his group home my body goes on extra alert — trying to sniff out anything untoward or bad or depressing or neglectful or dirty. I never find it in this place. Okay, the television is always on. But ain’t that America? You choose the technology to sink your face into all depending on your age, your culture, your social class, your preferences. So eggheads like Ned and I are always facing open laptops. Millennials like Ben and Max are always on that phone. Slightly older people I notice have iPads so they can read with huge letters. And group home staff often have televisions on. Ain’t no crime.

So I stand there and I feel and feel and feel — the air around me, the sense of things, and open my eyes extra wide. Nothing. It is safe.

And Nat is willing to go and stay there. He does whatever we want, whatever we need. And we, on the other hand, try to give him pleasing variety. We break up the weekend usually with Nat being here one or two of the weekend nights. We work it out with him: “You want to come home after breakfast, or before? Go back for dinner there?” We give him choices. We write it in with him, on the weekly calendars that settle on surfaces throughout our downstairs like leaves. I almost never recycle Nat’s calendars because sometimes he likes to study them even if they are over.

So we settle on his schedule and we bring him back. He runs upstairs, comes back down, sits on one of the couches. I bend towards him to kiss him goodbye and we exchange a glance. I think that I see in his eyes something — not sadness, but not happiness — but I don’t know, do I? Not wariness, either, thank God. But not peace. What I read there is that he is willing to go back but what if he’d rather stay with us?

I feel — or fear — that he’d prefer to live with us, and just go out during the day to his program where he volunteers all around greater Boston or takes hikes or goes to museums or bowling or kayaking. I have no doubts about his day. Neither does he. And while he loves it when I pick him up from there on Fridays, he is okay with going to the group home, too. Maybe more than okay. If he didn’t like it, he’d tell me. Right?

As long as he comes here at some point on the weekend. So — is it okay, what we do? What if he would prefer to live with us? Should he?

He thinks he’d prefer it. But would he? I think sometimes he’s bored out of his gourd here. Here there is very little routine, other than meals. The structured activities are few and far between. I ride my bike in the morning and he comes with me. I drop him off after a three-mile loop and then I continue on my own for another hour. He seems okay with that. I don’t think he’d do well going with me everywhere else for another twelve miles because there’s too much noodling, no definite plan. I don’t know.

He goes from couch to porch to playroom to his bed and back again. He refuses books, movies, music. He wants snacks, walks, friends. We can’t give him that all the time or even a lot of the time. He waits in the kitchen, silently telling me he wants a snack, or needs his meds. But at his group home, there are a lot of activities, and they also say he initiates a lot. They have late afternoon activities — the Y, bowling, shopping — and then dinner, then showers, then bed. Thursdays he goes to music. Different guys go out with him, and different staff. Variety and schedules, dependability. Kind people. Lively roommates who notice him.

Ned and I think the group home is great. But I wonder if Nat believes he’d rather be with us, boredom and all. So am I supposed to take him home? Or am I supposed to be helping him live with others which is the natural way of things? Eventually he will have to live with others. There won’t be anyone to take care of him once we’re gone, other than the group home. That’s a reality. And if he lives with us for decades more, how will he feel moving out when the time comes, and he’s 60? But am I supposed to think that far ahead?

Is it right that I feel relief, too, when I walk out of the group home and then feel excited about being alone with Ned? I know I’m supposed to have a life of my own, and I do. But is that fair to Nat, if he’d prefer living with us?

And what if it’s just kind of an anemic wanting? What if he’s okay enough with staying there?

A friend of ours sees this all black and white. His son is in a group home. He fought to get him in there. He says, “Hey, he’s got it good! He’s got a roof over his head, people to take care of his every need, things to do. That’s better than most people on this Earth.” I love this friend’s certainty, it’s like a cold glass of water on a parched day.

But then I’m back to just me and my wiggly certainty, my fears. My deep muscular love for Nat, for my boys, where I want everything good for them. And even when something is pretty darn good, I worry: is it good enough?


Your friend is right and truthfully are any of us happy all the time? Are we not bored, tired of our jobs, wanting to do something or anything else ?

But in the end we keep living . Keep learning to entertain ourselves , deal with others, and live in our own heads.

The grass is always greener over the fence, but we don’t live there.

I’m lucky to have one that doesn’t require such strict routines but even so by the end of summer I am ready for school . 5 years to plan routine in a land of little support . I’m envious of your choices .

— added by Farmwifetwo on Monday, August 7, 2017 at 10:03 am

Have you decided against getting the two family home/model for him that you spoke of a little while back? I think knowing what living situations are best are just such difficult decisions as every adult is different and what may be best for one may not be best for another. Also, regarding you friend’s certainty, I don’t think it’s that simple and I could never in a million years feel that at ease with it either so don’t feel like you should be feeling the same way as he does.

— added by Annie on Monday, August 7, 2017 at 12:36 pm

Family members sit across from my desk all the time filled with guilt concerning placing their loved one in one of our group homes for adults with ID. It’s a tough choice. I personally believe they have a right to their own lives as adults. Many of our residents would rather be with us than family full time. It gives them a sense of independence.

If a family fails to secure housing and community living for their disabled adult loved one in our day and age, they are doing a HUGE disservice to them!!
The worst is when I see a sibling come in that promised Mom and Dad they would take care of their brother or sister and find that it is too much with working full time, their own family needs, etc. OMG! they suffer from the guilt of what they feel is breaking that promise by placing a loved one like you wouldn’t believe!!! Oh it’s terrible!

Parents, if you make your children promise you they will take care of a disabled brother or sister in their home, full time after you are gone, SHAME ON YOU FOR NOT TAKING YOUR OWN RESPONSIBILITY OF SECURING HOUSING FOR YOUR DISABLED ADULT CHILD! You put it off on someone else and that is a huge burden to put off on anyone!

Yes, Susan Senator, you make the correct and difficult decision to do what you do not want to do, but that you know you MUST!
God bless you! Stay strong in mind and spirit. God is going to bless you for taking the hard road, ignoring those nagging feelings that plague you are merely a mother’s instinct to protect her child. Know that you ARE protecting him by securing his future! It is the utmost important thing you could possibly do for him!!!!!
And for us parents suffering too? KEEP WRITING! 🙂

— added by Win on Tuesday, August 8, 2017 at 10:22 am

It’s like you read my mind. Justin’s brother will not take care of him, of that one thing I am certain. He will end up in a type of group home someday. But I constantly vacillate between thinking I should keep him with us until we can no longer do so, and getting him into a different setting when he’s in his twenties and he’s more flexible and not when he’s in his forties or fifties. I know he’d want to stay with us for as long as possible, but I’m not sure that’s really the best situation for him, or for us. Thank you for voicing your thoughts on the issue, it helps to know I’m not alone with this!

— added by kim mccafferty on Tuesday, August 8, 2017 at 11:05 am

Pretty darn good is just that. Pretty darn good. My “my wiggly certainty, my fears” are around what I use to measure “Pretty Darn Good” Am I suing the measuring tools that matter most to her?

As you have often said figuring out Nat (Ashley in my case) is like detective work. All evidence may lead to such-and-such conclusion… but that’s my detective lense/measurement tools.

So it’s not so much Ashley giving enough of a “presentation” that would lead me to conclude she likes it where she is… For me Is more of a question am I using good measurement tools with all my ‘supposed’ frontal lobe competencies?????

Just yesterday my friend asked me “Does she seem Happy?” Sure when she has or is getting what works for her in the moment, but what the heck does that mean? If she eating hot-wings she’s happy! DD iced coffee-happy. The CD player has batteries-happy. The IPad is charged-happy. But is that a quality life? Does that mean this place or another is where she wants to live?

I. Absolutely. Can’t. Tell.

So am I settling for a life that appears to meet my list? (and of course there will always be things that will naggingly need to better) But she can’t tell me her list of, What matters mosts.

So on we go like detectives trying to measure with tools that are ours, not theirs. An overwhelming responsibility laced with “constant wiggly certainty and fears”. And intermittent wretched doubt.

This blog was soooo good I printed it and brought it to Ashley’s ISP meeting yesterday. I passed it out to all the participants hoping your prose would validate my feelings, that unfortunately, have caused providers a now-postural defensiveness towards me.

Don’t know yet if your blog has made a difference to them, but it certainly made a difference to me. Summed up best by husband when (after reading it) he said “see we’re not crazy, others think just like us.”

Whew, that’s a relief!

— added by Lauri Medeiros on Thursday, August 10, 2017 at 10:58 am

Wow Win, that had to be the most insulting comment I have ever read…towards families. Not everyone comes from your cookie cutter perspective. Not everyone wants their family member in a group home for a variety of reasons. To say families are not doing their jobs if they don’t stick their family member in a group home is really insulting. Seems to be by making a general sweeping statement like that it appears that you just view the disabled the adults as clones of each other who just need to be placed. They are people Win, not pets that should have been planned for when no one wants them anymore.

— added by Annie on Thursday, August 10, 2017 at 7:34 pm

Lauri: <3 thank you. I hope it made a difference. Love, me

— added by Susan Senator on Thursday, August 10, 2017 at 8:19 pm

When I come to your blog I feel understood. You express what I am feeling every time. I can’t thank you enough for writing it all down and putting it out there. The messiness and loveliness of it all.

— added by Susan Harrison on Thursday, August 17, 2017 at 9:04 am

What a reality check! Made me realize that I do the same thing, because I will never hear comments – good, bad, or ugly, from my guy. It’s up to me to create the narrative by observation, and what if I miss something? On the other hand, I know he’s living in the best possible place – I think I know that. So I too sniff, poke… surreptitiously check him for bruises when he showers… and wonder who will do the sleuthing when I’m gone? At home I see the extensive damage (holes, cracked windows, etc)or, on bad days, feel the ache where bones were broken – and I’m glad he has a place – and feel guilty, and around and around.

I really have to respond to “If a family fails to secure housing and community living for their disabled adult loved one in our day and age, they are doing a HUGE disservice to them!!” I don’t know what planet you live on, or your socio-economic status, or the “population” you’re working with, but here in NYC upper-middle class families with kids “on the spectrum” cannot secure housing with a long and drawn-out battle, and community engagement is an uphill battle, unless they are advocating for a person with what was once called Asberger’s. I submit the disservice charged by the writer is performed by society, not the family.

— added by VMGillen on Thursday, August 17, 2017 at 2:19 pm

Thank you!!

— added by Susan Senator on Thursday, August 17, 2017 at 6:03 pm

Thanks, Kim!

— added by Susan Senator on Thursday, August 17, 2017 at 6:04 pm

Thank you. That is all?.


— added by Molly on Thursday, October 19, 2017 at 8:10 am

I meant “that is all” to end with a smiley face but it changed it to a “?”. Ugh. But a sincere thanks to your many contributions to this very complicated journey.

— added by Molly on Thursday, October 19, 2017 at 8:12 am